"Disappointed with chemotherapy "

The department was running late when I arrived for my first session of chemo. A nurse sat with me injecting the drug, and I became aware of increasing pain at the point of entry. On withdrawal, it was discovered that the chemo drug had seeped through my vein and into the tissues.

The procedure was halted. It required 3 separate antidote infusions, immediately, and over the next 2 days. A Plastic Surgeon had to irrigate the area, it requires ongoing appts at plastic surgery.

A follow up appt at Oncology was disappointing. The doctor calling for me didn't get my name right, and didn't appear to know what had happened. They only opened my file when my voice rose, and they didn't make any comment about what had occurred.

I'm torn between feeling that insufficient care was taken initially, or it was just one of those things.

Responses

Response from
The Newcastle upon Tyne Hospitals NHS Foundation Trust 2 years ago

We are sorry you have felt let down by our service delivery, and would very much like to discuss this in detail with you and provide you with an individualised response, please contact Matron Peter Towns on 0191 213 9280 or our Patient Relations department on 0191 223 1382.

In response to the concerns you raise we are sorry you had these experiences, The Chemotherapy service does occasionally run into unforeseen problems which causes a delay to bringing patients through into the unit, we try as much as possible to run the until on time as we are very aware the added stress this causes whilst waiting, however we always ensure that the patients whose treatment is in progress is prioritised to maintain patient safety.

Some chemotherapy drugs can cause tissue damage if it leaks into the tissues. The nurses try to ensure the cannula (tube into the vein) is placed in the best veins to reduce the risk and then during the administration the nurses check progress regularly despite this it is a known risk that leakage into the tissues and damage can occur, and the protocol you describe is in place to ensure this is treated appropriately with follow up care as deemed necessary by the plastic surgery team.

The procedure was halted and antidote infusions/appointments with plastic surgeon – this is procedure following assessment by senior medical staff in the event of extravasation with anthracyline chemotherapy and the appropriate initial care was given.

All of the nurses on the unit receive extensive formal training and assessment in relation to administering to ensure they are competent in the administration of these drugs, they are very aware of the potential damage they may cause in the event of leakage. We understand how this experience will have affected your thoughts about chemotherapy and if you would like to discuss this face to face Matron Peter Towns is very happy to arrange this.

The Chemo resumed 10 Nov, my arm still requires dressing and the muscle is affected.

A Hickman Line had to be inserted, this appears to give faster absorbtion into the body, and perhaps because of this, affected another condition I cope with.

I also have Spinocerebellar Ataxia. No-one was able to tell me what effect Chemotherapy would have on this. SCA is is progressive degenerating neurological condition, a rare disease, incurable, life-changing. A full explanation can be found on AtaxiaUK.

There is no medication specifically for the condition, only for associated symptoms, personally I try to rely on as little as possible. So, in so far as Chemotherapy is concerned, I would say it does cause a worsening of SCA symptoms.

Thankfully symptoms become more manageable again approx 1 week after Chemotherapy but only time will tell whether there will be a lasting detrimental effect.

There was another issue related to my treatment which caused confusion between staff, and which was only resolved by intervention by my husband.

My Chemotherapy Schedule wasn't updated correctly every time the sessions were put back. This meant that staff thought I'd had Chemotherapy when in fact I hadn't. One printout showed only 4 sessions outstanding from a series of 6. At that point I'd had only 1 session which had to be aborted.

Staff do a marvellous job in keeping up patients spirits under very trying circumstances, and there are literally some 'Angels' out there.

Response from
The Newcastle upon Tyne Hospitals NHS Foundation Trust 2 years ago

Many thanks for your further feedback. In relation to your medical issue with regards to the Spinocerebellar Ataxia, please may we recommend that you discuss this with your Consultant in the first instance as it is important that this type of advice is specific, if you do not have an appointment in the near future please contact us as detailed below so we can facilitate this.

If you wish to discuss any issues or concerns in relation to your Chemotherapy further, or seek clarification of treatments schedules, Zoe Collins the Senior Ward Sister on Ward 36 would be happy to talk with you and can be contacted on 0191 2137036. Alternatively Peter Towns the Matron for Cancer services & Specialist Haematology is more than happy to discuss face to face and can be contacted on 0191 2139280.